Pages

Wednesday, 30 December 2015

The Christmas season is almost over with New Years approaching fast. It's strange how this time of year traditionally is one of hope and joy yet emotionally it seems to be challenging me.

1. This is our first Christmas without Albert, my deeply missed father-in-law. Christmas with him never felt superficial or inauthentic. There was a beautiful simplicity in the Christmas dinner and the time of gift giving somehow left you calm and full of peace. Christmas with him was not about long drawn out chaotic gift wrapped explosions, or trying to impress others in some attempt at grandeur but a message of Christ and of love. I miss him.

2. Gideon has been throwing up again and last night he was fevered. It shakes me when he gets like this- I literally got shaky when he threw up all over me, head to toe, at the last Christmas gathering. His episodes of getting sick are not easy to endure. When he throws up it's not just once, it's multiple times all in a row with this eerie stillness between each projection and I don't know if he's choking or aspirating. I hardly ate anything and it was so hard to focus on conversation. My nerves are shot. (As I was writing this he threw up again, splattering my living room, inducing a redressing interlude. My new spittle smelling pony tail makes me sad.)

3. My creativity and resourcefulness feel flat. I haven't been able to focus enough to knit and my lack of employment leaves me with an empty slot where I once found a use for my gifts. I tried to sew a princess dress for my niece but I became disappointed with the results and didn't even finish it. Even my desire to write has diminished.

Prayer for the day: Renew my spirit O Lord and fill me again with your joy that it may over flow unto others. Grant me peace and beautiful sparks of creativity that will energize and bring forth a newness in our lives.

---

Psalm 51, 7-17
7 Cleanse me with hyssop, and I will be clean; wash me, and I will be whiter than snow. 8 Let me hear joy and gladness; let the bones you have crushed rejoice. 9 Hide your face from my sins and blot out all my iniquity. 10 Create in me a pure heart, O God, and renew a steadfast spirit within me. 11 Do not cast me from your presence or take your Holy Spirit from me. 12 Restore to me the joy of your salvation and grant me a willing spirit, to sustain me. 13 Then I will teach transgressors your ways, and sinners will turn back to you. 14 Save me from bloodguilt, O God, the God who saves me, and my tongue will sing of your righteousness. 15 O Lord, open my lips, and my mouth will declare your praise. 16 You do not delight in sacrifice, or I would bring it; you do not take pleasure in burnt offerings. 17 The sacrifices of God are a broken spirit; a broken and contrite heart, O God, you will not despise.

Friday, 11 December 2015

We have been waiting for months for the results of a genetic test and today we got the call that Lowes Syndrome has been officially ruled out!

This is good news but it also means we still don't have a diagnosis; there is still a great big unknown looming over us. So what is the next step? More genetic testing. Testing that involves comparing both John and I's genes with Gideon's. We also have a date in January to see a neurologist in followup to the MRI we had.

Wednesday, 9 December 2015

So with all this time to myself, I've had time to do something I have never done before; I've sent out Christmas Cards.

Yes, it's a little embarrassing. We have received cards from friends and family over the years, but have never jumped on the Christmas Card Bandwagon. With this being our fist year, I wanted our cards to shine a little, so I embossed Merry Christmas in braille. How? - A couple of weeks ago, our early years center was cleaning out some of their nooks and crannies and they came across some low vision literature that they thought I might be interested in. Amongst their finds was a Parents Braille Kit given out by the CNIB. Although it seems to be missing the Story Book, it did have the stylus, slate and the Grade One Braille Home Study Guide.

You have to write all your letters backwards when using the stylus punch and on the back of the page, so the braille will be raised. I think I only messed up 3 cards :) I got better as I went along.

I think the end result was really nice. Even though no one in our family reads braille, I hope I'm creating awareness about low vision and the challenges of inclusion for all people in our society. Merry Christmas Everyone!

(You can buy a braille stylus and slate from the CNIB Store for under 15$.)

How are you spreading Christmas cheer this year? Have you had any challenges with trying to be inclusive during the holidays?

Wednesday, 2 December 2015

So this post has been a while coming. It has been something I've been putting off because it's been very challenging for me to come to terms with and it has had such an impact on my own personal identity.

This is my first week of official unemployment. - Yes I have put my career on hold.

There are a number of factors that have contributed to this life changing event and I have been surrounded by both support and disagreement over this decision within my personal circles. In the end, I feel that this is the best decision for my family and for myself.

One of the major factors of this decision comes down to the fallout of stress in families. If you haven't gathered by now, having a child with multiple medical issues can be stressful. This stress manifests itself in a number of different ways and all these manifestations have their own degree of fallout.

Some of this fallout includes:

1. STRESS TRANSFER: Stress leads to anger and frustration being transferred. This is transferred onto our spouses, onto our children, onto the dog, onto our friends and family and even onto the cutting board when chopping veggies. My calm and controlled self seems to loose it's temper, become emotional or become overwhelmed.

2. SIBLING SYNDROME: The stress on Alex these days has been very challenging for me. He has not been dealing well with days that are "not routine". He cries when he can't come to doctor's appointments with Gideon and I. He worries if I'm not at home when he has to go to bed because I'm home late due to medical appointments. He worries that when I go to a doctor's appointment that I will have to stay at the hospital. He feels sad and angry when he can't participate in the therapy sessions that go on in our home and wants so badly to be praised for showing off the skills that Gideon has been working on. He has not been listening as well and is looking for attention, anyway he can get it.

3. SOCIAL ISOLATION: Finding time to be social can be challenging, let alone finding the energy to be social. When there is free time, John and I usually just want to "be still". This means we don't have much of a social life- with our friends, let alone by ourselves.

4. EMPLOYMENT ISSUES: Stress has an impact on all areas of our life. Months ago, John was called into his boss's office because his "productivity had decreased". This was after his father had past away and Gideon's cataracts had come back a second time. Really? Seriously? (I don't think this really helped in the core issue of stress impacting work productivity- what do you think?) Trying to juggle medical appointments, therapy sessions, hospitalizations, daycare schedules, coworker strife, making up lost time, office politics along with grieving the loss of a loved one, grieving over the loss of a child's health, all colliding with the unknowns of the severity of Gideon's health issues makes employment difficult right now.

5. FINANCIAL STRESS: Our contact lenses are not being covering by ADP because our eye surgeon was temporarily not registered as a ADP distributor (was overdue on the membership fee?) at the time of our prescription. So even though she is now a registered distributor again, we still do not have our lenses covered. Each lens is $270 each. The red tape on this has been so frustrating. I am applying to have our Pediasure costs covered (his formula) and hopefully this will be approved, because he is still not eating solids at 15 months and 9 bottles costs us about $10. (He drinks about 6-7 bottles a day.) There is also the cost of gas and parking during medical appointments.

Although our financial stress is real, it has not felt as stressful as the other fallout stressors. We have always had enough and have never lived beyond our means. I think this fact made my decision to put my career on hold more palatable.

I know there is more fallout I could bring up but today both boys are in daycare and I have the house to myself. My plan of action is to clean the house and organize my life in an attempt to decrease the chaos :)